Brave child died after crossing Channel in dinghy so NHS could save him from rare disorder

Last year Real Britain met a little boy called Wissam Saleh who desperately needed to see a doctor in England, so his family risked a journey to Britain - with tragic consequences

It is almost exactly a year since I met a little boy called Wissam Saleh playing in a rubbish dump in scrubland where hundreds of refugees were sheltering along the Calais coast.

Last November I accompanied the campaigner Lord Dubs to the shores of Northern France to assess a deteriorating situation among the refugees stranded there. Even in the bleakness of a tarpaulin encampment in an abandoned field, Wissam was immediately noticeable.

A too-thin six-year-old boy with complex disabilities playing in a pile of nappies, empty tins and dirty cardboard with his big brother Abdul. His Syrian-Kurdish parents were nearby, heating a tin of food over a piece of burning wood.

His mum Amal was heavily pregnant. When we spoke in English, Wissam’s dad Wadie showed us a piece of paper with a name on it. “We need to see this doctor in England,” he explained, telling us their youngest son had a rare, life-limiting genetic disorder that affects only about 300 people worldwide.

“That’s why we are here. The UK has the only experts in Bloom’s Disease which my son Wissam has. We already lost our daughter to the same condition. We can’t lose another child. Please help us.”

His brother Abdul, then nine, told us in perfect English about his love of Arsenal, ‘The Gunners’. Wissam smiled his big smile.

Alf Dubs had made a journey across the English Channel to safety at almost the same age as Wissam. In times when Britain showed compassion to desperate children, he escaped Nazi-occupied Czechoslovakia via the Kindertransport. Between Alf, his assistant Candida Jones and I, we tried to keep our promise to help this desperate family.

But last month, Wadie and Amal lost their beloved boy.

With no safe route to the Bloom's experts in the UK, Wissam’s family ended up making a terrible journey on a dinghy across the Channel to try to save his life. A genetic heart condition linked to Bloom’s meant Wissam wasn’t strong enough to survive the aftermath of that journey.

On arrival at Dover, he was rushed to hospital – and then taken to the Bloom’s centre at Guys Hospital in London the family had crossed continents to get to. Because they were absolutely right, this was the help he needed.

As his condition worsened, he was transferred to Great Ormond Street Hospital where he died on November 16. Wissam is now buried in an Essex cemetery, 3,000 miles from their home in Syria – his funeral, a year to the day we met him in Calais.

Wissam died because politics has consequences. After we met the family in Calais, we quickly found out the rare genetic disorder makes it especially dangerous for Bloom’s patients to be sleeping rough –because they need to avoid exposure to the sun and to bacteria.

Wissam was fed food and medicines through a tube in his stomach, adding to the danger. We knew his sister had already died on their journey, in the refugee camps of Turkey.

On our return to London, I wrote in the Mirror warning of the grave danger Wissam was in, and kind-hearted readers raised money for him. Alf wrote to the doctors at the Bloom’s clinic at Guys and St Thomas’, who wrote letters in support of the family, and contacted NGOs.

But the fact was the Tory government under Suella Braverman and her predecessor Priti Patel had abolished every safe and legal route that would have been possible to use to bring a sick refugee child to the UK. Alf’s own “Dubs Amendment” legislation – which helped save the lives of 460 children seeking sanctuary in Europe – had been scrapped. Meanwhile, the Syrian Vulnerable Persons Resettlement Scheme (VPRS) created following the death of little Alan Kurdi – the little boy found lying face down on a beach near Bodrum in Turkey – had been closed in 2021.

And so, almost a decade since Alan came to symbolise the extraordinary risks refugees were taking to reach Europe, another little boy’s life has been lost as a direct consequence of the Hostile Environment. Under Braverman’s Home Office, every avenue we tried led to a dead end, and then we lost track of the family. Then the mobile we had for them was lost, and they disappeared.

We only found them when they turned up at the Bloom’s clinic in London, and a kind nurse remembered the letter we had written to the doctors there asking for help. Wissam’s parents had taken the only throw of the dice they thought they had left – and crossed the freezing Channel.

Their son, they reasoned, would die if they stayed in a rubbish dump in Calais. A journey by dinghy had terrible odds, for all of them, but not worse than certain death.

Last week, Candida and I went to visit Wadie and Amal at a holding centre for asylum seekers in Hertfordshire. Grief was etched all over their pale faces, the unbearable weight of having lost a second child only slightly lifted by the joy they have in a lively new addition to the family, who yet has no knowledge of the suffering of his parents.

The family were facing dispersal to Scotland, but the Home Office has allowed them to remain near their son’s grave on compassionate grounds. They don’t yet know what will happen with their asylum claim, but their newly-elected local Labour MP David Taylor – a long-time campaigner on Syria – and his wonderful staff are in touch with the family and helping support them. And we are hoping to take Abdul to see the Gunners.

Now Syria is once again in turmoil. And those who would turn away children like Wissam, are already asking why don’t the Syrians go back?

How should parents whose son is buried in Essex return far from his grave? And what future will there be for endlessly murdered and persecuted Kurds like them in the new Syria?

Both of their children will now need genetic testing and screening by the Evelina Children’s Hospital for the foreseeable future.

And how many years will it take before there is a functioning health service once again in El Ghouta or Damascus?

Despite the trauma of losing his brother and his terrible voyage, Abdul is doing well at school in Hertfordshire, the first time he has been able to go to school in a long while. The grieving parents are holding their older son and new baby close.

The least this country owes them is to stay as long as they need to.